Chronic Life-threatening Illness Research Articles

The Need for Advance Care Planning as a Pivotal Means for Respecting the Patient’s Will in Poland: Learning Points from Swiss and Australian Models

Abstract Self-determination is pivotal for a patient’s autonomy. Decisions at the end of life should reflect the human right to decide on the last days of life according to personal beliefs, philosophy, preferences, and values. Advance Care Planning (ACP) aims to ensure that patients receive medical care consistent with their values, goals, and priorities during progressive life-threatening chronic illness. We present decades-long experience of the implementation of ACP in different legal systems, in Switzerland and Australia, and the current legal situation of pro futuro statements in Polish law. Irrespective of jurisdiction and despite the apparent benefits of ACP, its implementation may face numerous impediments, i.e. poor public health messaging, a lack of skilled, trained personnel to deliver and sustain ACP initiatives, misunderstanding of the practical application of an advance care directive in real terms, and misperception of ACP as a form of crypto-euthanasia. Addressing these impediments would be a prerequisite for its successful national implementation. Furthermore, successful implementation needs public dialogue, collaboration between legislators and healthcare professionals, and engagement with the public, patients, and caregivers to foster a greater understanding of the true meaning of self-determination.

Acceptability and feasibility of a pilot randomized controlled trial of Narrative e-Writing Intervention (NeW-I) for parent-caregivers of children with chronic life-threatening illnesses in Singapore

BackgroundNarrative e-Writing Intervention (NeW-I) is a novel psycho-socio-spiritual intervention which aims to bridge gaps in paediatric palliative care by providing anticipatory grief support to parent-caregivers who are looking after their child with a chronic life-threatening illness in Singapore. This is done via a therapist-facilitated smartphone app that focuses on strengths and meaning derived from parents’ caregiving journey. NeW-I is empirically informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by anticipatory grief interventions literature for improving the holistic well-being for parent-caregivers of seriously ill children. NeW-I is implemented in Singapore as an open-label two-armed randomized controlled trial comprising an intervention and control group.MethodsThis study examined the acceptability (via analysis of participants’ post-intervention qualitative feedback and responses to a post-intervention evaluation survey) and feasibility (via records and memos of therapists’ experience of delivering the intervention) of NeW-I among 26 intervention participants drawn from the larger trial.ResultsFramework analysis of participants’ post-intervention feedback revealed four themes, namely: (i) Meaningful opportunity for reflection, (ii) Congruity with parent-caregivers’ needs, (iii) Compatibility of online narrative writing and (iv) Sustainability and enhancement recommendations. The post-intervention evaluation survey showed that participants were overall satisfied with their NeW-I experience with a large number of participants acknowledging that NeW-I had improved their spiritual well-being, hopefulness about the future and perception of social support that was available to them, as well as lessened their feelings of sadness and depression, caregiver burden and fear and anxiety about their child’s illness. The research team found it feasible to deliver the intervention in the current setting.ConclusionNeW-I is an innovative e-health tool that could immeasurably value-add to paediatric palliative care services for Asian families in Singapore and around the world.Trial registrationClinicalTrials.gov, ID: NCT03684382, Verified: September 2018.

Public Health Perspective of Primary Palliative Care: A Review through the Lenses of General Practitioners.

The rising trend of chronic life-threatening illnesses is accompanied by an exponential increase in serious health-related suffering. Palliative care is known to ameliorate physical and psychosocial suffering and restore quality of life. However, the contemporary challenges of palliative care delivery, such as changing demographics, social isolation, inequity in service delivery, and professionalisation of dying, have prompted many to adopt a public health approach to palliative care delivery. A more decentralised approach in which palliative care is integrated into primary care will ensure that the care is available locally to those who need it and at a cost that they can afford. General practitioners (GPs) play a pivotal role in providing primary palliative care in the community. They ensure that care is provided in alignment with patients’ and their families’ wishes along the trajectory of the life-threatening illness and at the patient’s preferred place. GPs use an interdisciplinary approach by collaborating with specialist palliative care teams and other healthcare professionals. However, they face challenges in providing end-of-life care in the community, which include identification of patients in need of palliative care, interpersonal communication, addressing patients’ and caregivers’ needs, clarity in roles and responsibilities between GPs and specialist palliative care teams, coordination of service with specialists and lack of confidence in providing palliative care in view of deficiencies in knowledge and skills in palliative care. Multiple training formats and learning styles for GPs in end-of-life care have been explored across studies. The research has yielded mixed results in terms of physician performance and patient outcomes. This calls for more research on GPs’ views on end-of-life care learning preferences, as this might inform policy and practice and facilitate future training programs in end-of-life care.

Potential for Endocannabinoid-Induced Attenuation of Bipolar-Relevant Behaviors in Mice With Reduced Dopamine Transporter Expression

Bipolar disorder (BD) is a chronic life-threatening illness that causes untold harm in a sufferer’s life, e.g., 1-in-3 attempt suicide. Current treatments cause unwanted side-effects with novel treatments urgently needed. People with BD use cannabis use far more than the general population, claiming self-medication. Δ9-tetrahydrocannabinol (THC), is the primary psychoactive component of cannabis and a cannabinoid-type-1 receptor (CB1R) agonist. Determining whether cannabis-related drugs remediate BD-related behaviors is vitally needed.

Prevalence and Factors Associated with Depression among HIV/AIDS-Infected Patients Attending ART Clinic at Jimma University Medical Center, Jimma, Southwest Ethiopia.

Background HIV is a chronic life-threatening illness and, like other similar chronic and stigmatizing illnesses, can be stressful to manage. Depression is a common mental health problem that deteriorates the quality of life of people with HIV/AIDS and found to be a strong predictor for noncompliance to antiretroviral therapy treatment. Therefore, epidemiological evidence on the factors associated with depression among patients with HIV/AIDS can contribute towards effective and efficient preventive health care strategies for this population. Objectives To assess the prevalence and factors associated with depression among HIV/AIDS-infected patients attending ART clinic at Jimma University Medical Center, Jimma, Southwest Ethiopia, in 2018. Methods This study followed an institution-based cross-sectional quantitative study design. A simple random sampling method yielded 303 participants who were interviewed from April to May 2018, using a pretested questionnaire, followed by their card review. The SPSS version 23 was used for bivariate analysis which was used to find out the significance of association. Variables that showed association in bivariate analysis at p value < 0.25 were entered to multivariable logistic regressions to control for confounders, and the significance of association was determined by 95% confidence interval and p value < 0.05. Results The point prevalence of depression was 94 (31%). Variables like sex (AOR = 0.510 (95%CI = 0.264‐0.986)), marital status (AOR = 3.610 (95%CI = 1.649‐7.901)), opportunistic infection (AOR = 3.122 (95%CI = 1.700‐5.733)), and medication adherence (AOR = 0.470 (95%CI = 0.266‐0.831)) were significantly associated with depression. Conclusion and Recommendation. From the findings of this study, it is possible to conclude that depression was highly prevalent among people living with HIV/ADS. Sex, marital status, opportunistic infection, and medication adherence were found to be associated with depression and need attention from the health professional working in the ART clinic.

A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial.

BackgroundA novel evidence-based Narrative e-Writing Intervention (NeW-I) has been developed and tested in Singapore to advance psychosociospiritual support for parents of children with chronic life-threatening illnesses. NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by literature on anticipatory grief interventions for improving the holistic well-being of parent caregivers of seriously ill children.ObjectiveThis study's aim was to provide an accessible platform, NeW-I—which is a strengths- and meaning-focused and therapist-facilitated mobile app and web-based counseling platform—that aims to enhance quality of life, spiritual well-being, hope, and perceived social support and reduce depressive symptoms, caregiver burden, and risk of complicated grief among parents of children with chronic life-threatening illnesses.MethodsThe NeW-I therapist-facilitated web-based platform comprises a mobile app and a website (both of which have the same content and functionality). NeW-I has been implemented in Singapore as a pilot open-label randomized controlled trial comprising intervention and control groups. Both primary and secondary outcomes will be self-reported by participants through questionnaires. In collaboration with leading pediatric palliative care providers in Singapore, the trial aims to enroll 36 participants in each group (N=72), so that when allowing for 30% attrition at follow-up, the sample size will be adequate to detect a small effect size of 0.2 in the primary outcome measure, with 90% power and two-sided significance level of at least .05. The potential effectiveness of NeW-I and the accessibility and feasibility of implementing and delivering the intervention will be assessed.ResultsFunding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing.ConclusionsNeW-I aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.Trial RegistrationClinicalTrials.gov NCT03684382; https://clinicaltrials.gov/ct2/show/NCT03684382International Registered Report Identifier (IRRID)DERR1-10.2196/17561

Medicinal herbs with anti-depressant effects

Depression is a life-threatening chronic illness which affects people worldwide. Drugs used to treat this disease have multiple side effects and may cause drug-drug or drug-food interactions. Additionally, only 30% of patients respond adequately to the existing drugs and the remaining do not achieve complete recovery. Thus, finding effective treatments that have adequate efficacy, fewer side effects and lower cost seem to be necessary. The purpose of this study was to review animal and double-blind clinical studies on the anti-depressant effects of medicinal herbs. In this study, validated scientific articles indexed in PubMed, SID, Web of Science and Scopus databases were reviewed. A database search was performed using the following terms: clinical trials, depression, major depressive disorder, essential oil, extract and medicinal plant. Positive effects of a number of herbs and their active compounds such as St John’s-wort, saffron, turmeric, ginkgo, chamomile, valerian, Lavender, Echium amoenum and Rhodiola rosea L. in improvement of symptoms of mild, moderate or major depression have been shown in clinical trials. The above plants show antidepressant effects and have fewer side effects than synthetic drugs. Hence, they have the potential to treat patients with depression.

Neurocognitive functioning in MDR-TB patients with and without HIV in KwaZulu-Natal, South Africa.

Optimising medication adherence is one of the essential factors in reversing the tide of a TB-HIV syndemic in sub-Saharan Africa, especially South Africa. Impairment in key neurocognitive domains may impair patients' ability to maintain adherence to treatment, but the level of cognition and its relationship to HIV status has not been examined in individuals with drug-resistant TB. We therefore investigated performance on several key neurocognitive domains in relationship to HIV status in a multidrug-resistant tuberculosis patients (MDR-TB) sample. We enrolled microbiologically confirmed MDR-TB inpatients at a TB-specialist referral hospital in KwaZulu-Natal province, South Africa. We collected cross-sectional data on sociodemographic, clinical and neurocognitive function (e.g. attention, memory, executive functioning, language fluency, visual-spatial, eye-hand coordination). For the primary analysis, we excluded participants with major depressive episode/substance use disorder (MDE/SUD). We fitted adjusted Poisson regression models to explore the association between HIV and neurocognitive function. We enrolled 200 people with MDR-TB; 33 had MDE/SUD, and data of 167 were analysed (151 HIV+, 16 HIV-). The mean age of participants was 34.2years; the majority were female (83%), and 53% had not completed secondary school. There was evidence of impaired neurocognitive functioning across all domains in both HIV+/- study participants. Based on the regression analyses, individuals with co-infection (MDR-TB/HIV+), as well as those who had longer duration of hospital stays experienced significantly lower cognitive performance in several domains. Poor cognitive performance was significantly related to older age and lower educational attainment. The presence of major depression or substance use disorders did not influence the significance of the findings. Adults with MDR-TB have significant neurocognitive impairment, especially if HIV positive. An integrated approach is necessary in the management of MDR-TB as cognitive health influences the ability to adhere to chronic treatment, clinical outcomes and functionality.

Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore

BackgroundIn 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child’s chronic life-threatening illness, there is no such study within the Asian context.MethodsTo bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018.ResultsData analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants’ lived experience of their child’s chronic life-threatening illness and death, starting from the diagnosis of their child’s chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child’s death and the losses which accompanied the death (Theme 3) and participants’ experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or ‘rituals’ that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7).ConclusionThese themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.

Prevalence of Various Cancer-Related Risk Factors among the Forcibly Displaced Myanmar National Community, the Rohingya, in Bangladesh: A Preliminary Assessment

Background: Large numbers of Forcibly Displaced Myanmar Nationals (FDMN), also called the Rohingya community, in Bangladesh face chronic life-threatening illnesses. Symptoms concerning for a cancer diagnosis are not easily evaluated and treated by healthcare systems available to this population. We conducted a rapid needs assessment of cancer screening and pain and palliative care with the goal of identifying the prevalence of cancer risk factors among the Rohingya who attended local health facilities. Methods: A cross-sectional study was conducted in the Kutupalong camp of Ukhiya, Cox’s Bazar among the Rohingya community. Data were collected through purposive sampling. Face-to-face interviews were done using a structured questionnaire. Statistics were analyzed by using IBM SPSS 23. Results: Out of 85 participants, 75 were female and 10 were male. 70 (82.4%) were uneducated (defined as lacking any formal institutional education), 10 (11.8%) people completed the primary level education and only 5 (5.9%) people received secondary level education. There were many participants with pulmonary disease with 35 (41.2%) people endorsing a history of asthma, bronchitis, and/or tuberculosis. There was a lack of female menstrual sanitation and hygiene with only 25 (29.4%) patients using sanitary napkins, that were donated by Non Government Organizations. Only 5.9% of the women had received any form of cervical cancer screening. Conclusion: This study identifies risk factors associated with cancers and life-limiting diseases among the FDMN Rohingya refugees in Bangladesh. It is necessary to develop targeted education, cancer screening and cancer awareness programs for this population.

Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness

ObjectiveThis is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care...

FDA Clears App to Help Retain Patients in Treatment for OUD

Experts in addiction and in digital technology say the app for opioid use disorder is an exciting development, but it remains to be seen if the technology will be widely used.

Palliative care : Challenges in the intensive care unit

Intensive care unit (ICU) stays often result due to an acute, potentially life-threatening illness or aggravation of a chronic life-threatening illness. In many cases, ICU patients die after life-sustaining treatments are withdrawn or withheld. When patients are asked, they prefer to die at home, although logistic and medical problems often prevent this. Therefore, attention focuses on care at the end of life in the ICU. Despite many efforts to improve the quality of care, evidence suggests that the quality in hospitals varies significantly and that palliative care in the ICU has not significantly improved over time. In this review, aspects of palliative care that are specific to ICU patients are discussed.

Barriers to Access to Palliative Care.

Despite significant advances in understanding the benefits of early integration of palliative care with disease management, many people living with a chronic life-threatening illness either do not receive any palliative care service or receive services only in the last phase of their illness. In this article, I explore some of the reasons for failure to provide palliative care services and recommend some strategies to overcome these barriers, emphasizing the importance of describing palliative care accurately. I provide language which I hope will help health care professionals of all disciplines explain what palliative care has to offer and ensure wider access to palliative care, early in the course of their illness.

A dual-targeting approach to inhibit Brucella abortus replication in human cells.

Brucella abortus is an intracellular bacterial pathogen and an etiological agent of the zoonotic disease known as brucellosis. Brucellosis can be challenging to treat with conventional antibiotic therapies and, in some cases, may develop into a debilitating and life-threatening chronic illness. We used multiple independent assays of in vitro metabolism and intracellular replication to screen a library of 480 known bioactive compounds for novel B. abortus anti-infectives. Eighteen non-cytotoxic compounds specifically inhibited B. abortus replication in the intracellular niche, which suggests these molecules function by targeting host cell processes. Twenty-six compounds inhibited B. abortus metabolism in axenic culture, thirteen of which are non-cytotoxic to human host cells and attenuate B. abortus replication in the intracellular niche. The most potent non-cytotoxic inhibitors of intracellular replication reduce B. abortus metabolism in axenic culture and perturb features of mammalian cellular biology including mitochondrial function and receptor tyrosine kinase signaling. The efficacy of these molecules as inhibitors of B. abortus replication in the intracellular niche suggests “dual-target” compounds that coordinately perturb host and pathogen are promising candidates for development of improved therapeutics for intracellular infections.

The Perceptions of Palliative Care Among Family Caregivers of Non-Cancer Patients

Family caregivers play an important role in providing palliative care for patients with chronic life-threatening illnesses. Understanding the experience of family caregivers regarding palliative care can identify areas in which to improve the quality of care at the end of life. The purpose of this study was to explore the perceptions of palliative care among family caregivers of non-cancer patients. This research was conducted using a qualitative descriptive design with content analysis. A total of 10 family caregivers with a mean age of 53.6 years were recruited from a home healthcare organization of a medical center in central Taiwan. Data were collected from the family caregivers using semi-structured interviews from April 2008 to December 2008. The findings revealed 6 main themes: unfamiliar labels for a layperson, palliative care is linked to cancer, palliative care is to give up, palliative care is waiting to die, the decision to provide palliative care is made by healthcare professionals, and palliative care is to let it be. Family caregivers provide long-term home care for chronically ill patients. When they were unable to find a good solution for care, they relied on the ＂let it be＂ philosophy of Taoism. Our findings suggested that healthcare providers should recognize that dealing with palliative care in the home is a continuing care process, and that they can be the best advocates and instructors for patients and family caregivers to enhance the quality of long-term palliative care.

Positive Effect of Positive Psychological Factors to the coping of Chronic Life-threatening Illnesses: Evidence, Controversies and Suggestion

Chronic life-threatening illnesses which are difficult to cure and have longer duration would endanger the life in severe cases and seriously affect the lives of patients and their families. It is well documented that some positive psychological factors, such as benefit finding, post-traumatic growth, sense of coherence, fighting spirit and optimism, had positive effects on treatment of disease through biological, behavioral and social process. The methods of positive psychological intervention including intervention to the attitude or perception of disease and inducing positive psychological factors had positive effect on disease coping. There were two main controversies, one was the scientificity of the methods and the other was the clarity of casual relationship between positive psychological factors and disease coping. According to controversies, further work needs to be done to establish the causal relationship between positive psychological factors and the coping and rehabilitation of diseases by relying mainly on the experimental method and combining with other methods.

Cannabis use in palliative care – an examination of the evidence and the implications for nurses

Examine the pharmaceutical qualities of cannabis including a historical overview of cannabis use. Discuss the use of cannabis as a clinical intervention for people experiencing palliative care, including those with life-threatening chronic illness such as multiple sclerosis and motor neurone disease [amyotrophic lateral sclerosis] in the UK. The non-medicinal use of cannabis has been well documented in the media. There is a growing scientific literature on the benefits of cannabis in symptom management in cancer care. Service users, nurses and carers need to be aware of the implications for care and treatment if cannabis is being used medicinally. A comprehensive literature review. Literature searches were made of databases from 1996 using the term cannabis and the combination terms of cannabis and palliative care; symptom management; cancer; oncology; chronic illness; motor neurone disease/amyotrophic lateral sclerosis; and multiple sclerosis. Internet material provided for service users searching for information about the medicinal use of cannabis was also examined. The literature on the use of cannabis in health care repeatedly refers to changes for users that may be equated with improvement in quality of life as an outcome of its use. This has led to increased use of cannabis by these service users. However, the cannabis used is usually obtained illegally and can have consequences for those who choose to use it for its therapeutic value and for nurses who are providing care. Questions and dilemmas are raised concerning the role of the nurse when caring and supporting a person making therapeutic use of cannabis.

‘Cool friends’: an evaluation of a community befriending programme for young people with cystic fibrosis

To evaluate the impact of a community youth befriending programme on a group of young people with chronic illness and their carers. Befriending is said to be highly valued by those who are befriended, improving self-esteem and offering opportunities for increasing skills and social activities. A qualitative longitudinal pilot study of young people with cystic fibrosis, their carers, their befrienders and other personnel, closely involved with the families. Seventeen participants were interviewed over one-year to explore their experiences of befriending. Ten of these were either befriendees (aged 8-18 years) or their parents. Half of these families were interviewed twice; once at the beginning of the befriending relationship and another at one year later. Seven other personnel, closely involved with the young people, were interviewed; two play therapists and two education liaison personnel. A focus group was also held with three befrienders. This range of data sought to reveal a wide perspective on the impact of befriending. Befriending was seen as a good thing by all parties involved. It offered a distraction from illness, respite for carers and helped young people to raise issues of personal importance. Befriending was challenging for the befrienders given the diagnosis of this group of befriendees. Negative experiences could result if pairs are poorly matched or if befrienders are not committed to the process. Exit strategies were not addressed. Sustainable befriending relationships are dependent on commitment from both parties and transparency about the expected practices and processes from the beginning to the end of the relationship. The evidence that is available in support of befriending is mixed. To date this is the first study in relation to people with cystic fibrosis and will add to the body of knowledge of befriending in young people with a life-threatening chronic illness.

Can We Improve Our Physical Health by Altering Our Social Networks?

Persons with more types of social relationships live longer and have less cognitive decline with aging, greater resistance to infectious disease, and better prognoses when facing chronic life-threatening illnesses. We have known about the importance of social integration (engaging in diverse types of relationships) for health and longevity for 30 years. Yet, we still do not know why having a more diverse social network would have a positive influence on our health, and we have yet to design effective interventions that influence key components of the network and in turn physical health. Better understanding of the role of social integration in health will require research on how integrated social networks influence health relevant behaviors, regulate emotions and biological responses, and contribute to our expectations and worldviews.